“Using combination chemotherapy, men and women were dragged to the very brink of physiological tolerability but then pulled back just in time to send the cancer, but not its host, careering off the edge,” wrote Siddhartha Mukherjee, author of The Emperor of All Maladies: A Biography of Cancer.
This is not, as it sounds, an extract from a handbook written by Joseph Mengele, though it could well have been. The only thing worse than a diagnosis of cancer is the treatment of it. Approaching three years into a prognostic death-horizon of twelve months caused by extremely aggressive prostate cancer, I have personal experience of the assaults on wellbeing that are the desperate measures of the physicians charged with the ‘battle’ against cancer.
The doctors are not monsters. They really do want to do all they can to keep their patients alive, and to use the full armoury of resources available to achieve this. In general they are good people, friendly, knowledgeable, and empathetic. It genuinely hurts them to admit that they’ve run out of suggestions as to what’s left that might keep me alive.
So it sometimes strikes me as bizarre that I’m currently relaxing in a very comfortable chair, hooked up to a machine that is administering poison straight into my veins. The offending elixir is appropriately shrouded in a black plastic bag, oozing with symbolism. It’s all so civilised that you could easily forget that a deadly substance is now circulating in your body, akin to the administering of a lethal injection to prisoners.
* * *
When I was a boy, my mother wanted me to become a physician who would cure cancer. I became a hippie instead. She was motivated by the painful deaths of both her parents, who died some years apart of the disease. I never knew them, so I suppose any visceral motivation for either study or healing was lacking. I took satisfaction but no credit that my Mum lived to 91, though her last years were fogged with Alzheimer’s.
My father did have an encounter with cancer. After being beaten senseless down a sidealley in Perth, he had his face reconstructed. Sometime later he was diagnosed with cancer of the jaw. His treating surgeon said the operation he was about to perform might involve removing his tongue. Dad replied that he’d rather die, but signed the permissions anyway.
In the end they tried an experimental procedure, inserting a small radioactive capsule in his jawbone. He flew back to New Zealand and stayed with us months later, and I’d never seen him looking so ill. I suspect both he and I worried that he might be dead withing a few months. As it turned out, he lived a further 39 years. So the operation was a success. As far as I know he died with the capsule still glowing in his jawbone.
I guess you could say I failed my mother’s dreams for me, in this and other ways. She stayed proud of me just the same. It wasn’t the only hope that I left crushed in my wake, but that one comes to mind in my current circumstances. Ah well, regrets are a painful waste of energy, or so it seems to me. On the positive side, I’m still alive as I write.
* * *
While the infusion of death-dealing chemicals is being administered, I’m pleasantly jacked by the queen of steroids: dexamethasone. This precursor to chemotherapy shares many of the attributes of another form of ‘meth’ – it causes one to feel bigger and better and stronger – at least until the user falls of a cliff when the substance is no longer zinging through the body. You may recall that a certain ex-President of the USA was treated with it after he contracted Coronavirus. That didn’t end well.
New Zealand's MedSafe warns "potentially severe psychiatric reactions may occur" after taking dexamethasone. "Psychic derangements range from euphoria, insomnia, mood swings, personality changes and severe depression to frank psychotic manifestations." Tell me about it. Every course leaves me a wretched insomniac for three days after. And by my third treatment I am inconsolably suicidal.
But enough of the pleasant side-effects. Suicide would at least put a stop to the other consequences of Docetaxel, my poison of choice. Nausea, lethargy, diarrhoea, constipation, head colds, loss of appetite, mouth ulcers, anaemia, hair loss, shooting pains in the joints – and, well, the feeling that one has been poisoned and is unlikely to recover. Life is lived in the desperate hope of that one week of relative normality before the next treatment.
* * *
Up until the age of 64 I’d never spent a night in hospital. I was that robust enigma of masculinity – a man who never got sick (man ‘flu excepted). Which was all the more mysterious given my cavalier attitude to health in general, and longstanding abuse of my body. Because of such false confidence, I was completely side-swiped by a diagnosis of extremely aggressive prostate cancer. The cancer was indifferent to my astonishment.
It was and remains a wakeup call. I was surprised to find myself imperilled from the inside – my own metabolism threatening to pull the plug on the whole endeavour of existence. But I reasonably quickly moved past the blame game. I didn’t regard my rogue DNA as a terrorist cell hellbent on doing me down. Nor as some visitation from the gods, or karmic justice being pronounced on my many transgressions. There must be something to learn from cancer, I supposed.
The cause was less important than the hope of a cure. I’d fought my way through a few scrapes in my span of years, and felt confident that my pure obduracy would stand me in good stead for the current incursion. I did feel bad for my loved ones, and especially my close family, for bringing this shadow across their lives. They’d done nothing to deserve the doubt, fear, and uncertainty that had arisen since my diagnosis. Our elder daughter was not enamoured of the medical verdict. “How fucking dare they?” she railed.
I found war metaphors to be unhelpful. I understood what might prompt people to use such language, and I even have a ‘Fuck Cancer’ tee shirt in my wardrobe. But I resisted dualistic ideas that cast me as the innocent victim of some external force. It was my own body; my unique cells that had gone psycho on me, dividing and multiplying like a maths student on speed. Nevertheless, my friendly overtures did not find a reciprocal détente from cancer.
* * *
The most profound reflection on the human journey is that commonly repeated adage: “shit happens”. Indeed it does, and no amount of forewarning or avoidance behaviour will prevent it from descending upon us. Shit is no respecter of persons, status, nationality or character. Its nature is to fall upon the unsuspecting with relentless enthusiasm, unannounced and yet inevitable.
Because I’ve reached the developmental stage of ‘grumpy old bastard’, I have little tolerance for people who luxuriate in misery or consider themselves exempt from that golden rule of turd magnetism. Nor for the chattering masses of blame determination. It is not generally the fault of the recipient (though the Darwin Awards might suggest otherwise), nor can it be sheeted home to either benign or punitive deities. It’s just shit; it happens.
I waste no time wondering what I might have done to deserve cancer, nor asking ‘why me’? This is energy that might be otherwise used for beneficial endeavours, such as drinking wine or playing with a dog. My diagnosis might have stunned me, but it never became the centre of my existence. I went out and bought a road bike, which seemed a good idea until I fell off several times. Shit happens.
* * *
People were full of breathless advice. In the early days much of my time was spent in politely declining recommendations for diet and unorthodox treatment from well-meaning spectators. Everything from tomatoes to apricot kernels would do the trick, evidenced by Uncle Fred who’s still living a healthy life twenty years after diagnosis. I recognised the suggestions as a form of compassion offered by observers who had nothing else to give.
For a while I embarked on a regime of Vitamin C infusions. It seemed the infusion came directly from our bank account into that of the medical practice administering the treatment. During this period of unwitting sponsorship, my PSA (indicative of the progress of cancer) jumped from 7 to 21. I decided this was not working for me, even though it had been successful for a number of people I knew.
I imagine it’s because cancer is so prevalent that everyone has an opinion about how to cure it. We all know the stories of people who travel to remote parts of the world (or at least did before Covid) for unorthodox regimes. Generally they return home and die, having exhausted whatever resources they may have had for their surviving family to live on. Hope drives many misguided adventures.
For me, the first step lay in accepting the cancer. While not exactly cosying up to my tumours, I came to understand myself as a man with a life-threatening disease. This didn’t change the facts, but did shift my attitude. I wasn’t dead yet, and so I determined that the best antidote to impending demise was to live as fully as I could with my cancer. We were, my cancer and I, on a shared adventure.
* * *
Quite the adventure it was. First came the surgery. A nearly five-hour operation, which my highly experienced surgeon described as one of the most difficult he’d ever performed. He’d already rattled me with the news that he’d have to go ‘wide’, leaving me impotent afterward. The benefit, he hoped, was that he’d excise the renegade cells altogether.
No such luck. A pesky sect of cancer militia had taken refuge next to my bowel – the equivalent of fleeing to the mountainous caves of Pakistan. These recalcitrant renegades could not be scraped out without perforating the bowel, which he gave me to understand would not be a good thing. It was a sobering thought that the only thing to be completely removed was the prospect of ever having sex again.
Then, when my PSA started climbing alarmingly, a consultation with the radiologist. He informed me that there was no hope of radiotherapy, as the offending cells were tucked in against the bowel. When asked for a prognosis, he told me (with some sorrow) that I had 12–18 months left. I celebrated Christmas of 2017 in the maudlin expectation that it might be my last.
Summoning our courage, my wife and my cancer and I (a metastasis-à-trois?) decided to move to Central Otago, where the cemetery plots are cheaper. We all managed to live together without too much trouble, until a scan revealed my rapidly-dividing partner had established tumours in my abdomen. The Dunedin-based oncologist suggested he could ‘lance’ the fuzzy spots with a blast of radiation - highly-targeted to avoid the bowel.
This was time-consuming and complicated as I was swallowed in the maw of a machine with rotating arms that threatened to consume me whole. But it was painless, and apart from a little tiredness, was bearable. I don’t think it was successful however, as my various specialists frowned while consulting my notes. By this stage I had already made it beyond my use-by date.
Then came chemotherapy.
* * *
The driving fear among humans (I presumptuously consider myself one) is that life will come to an end. When you think about it, that’s kind of bizarre. That conclusion is blatantly evident quite early on in the piece. Death is the one thing we don’t have to doubt – it comes to us all. The only uncertainty is when it will visit on an individual basis. Many of us deal with our fear by deciding to ignore death – hoping that it might evaporate like a mistimed fart.
Those of us who have been befriended by cancer generally have plenty of time to reflect on the prospect of impending demise. My own conversation with approaching doom has been persistent and enlightening. Being as honest as I can (which is never easy), I can say that I have no fear of death in itself. Everything comes to an end. Every night we close our eyes and sleep offers preparation for finitude.
The sting is not in dying, but in the those who are left behind. My crazy Scots wife swears that if I die she’ll kill me. Seriously, the pain is borne by those who are confronted by a profound absence that once was occupied by the object of their affections. This impending grief is not lost on we who have been given a death sentence. We carry the burden of guilt, every bit as present as our illness.
To the biblical question ‘O death, where is thy sting?’ I would respond that it resides in the breaking of human ties. Whatever we might think of notions of reincarnation or an afterlife, we are undone by the prospect of lack of physical contact, the sound of a familiar voice, the missing plate at the table. My own acceptance of the certitude of death does nothing to relieve the loss of those who are left alone to mourn.
* * *
Chemo turned out to be the entry into a claustrophobic tunnel that almost consumed me. The doctor and nurses were compassionate and breezy as I embarked on a prescribed regime of six ‘treatments’. I hate the way that word contains ‘treat’. It’s put me off chocolate altogether. My cancer and I considered ourselves quite robust, and so were unprepared for what followed.
By the third ‘treatment’, I lay in bed considering the various means of killing myself. The prospect seemed better than the journey through hell I was currently experiencing. Putting a sudden end to things struck me as a better option than being slowly poisoned to death. The cruel incentive was that it seemed to be working (a view not shared by my cancer, which was withering like a weed sprayed with herbicide). My PSA dropped from 6.9 to 1.4.
Lest you should think I’m a weaselly wimp about all this, I point out that I have known hard times. I survived a stint in a Moroccan prison, our beautiful daughter died a few years ago, I lost my sex life, I suffer from constant hot flushes that cause me to drip sweat into the bedsheets, I take enough pills to tranquilise a horse each day, and I live with the expectation that I will die soon.
So when the oncologist suggested I could opt out of chemo should I choose to, I jumped at the chance like a lemming with vertigo. In my newly hairless head I worried that people might think I was not man enough to take it. But then I decided ‘Fuck that!’ Without knowing for sure how many years I have left, I knew that it was time to wrest control of my wellbeing back to myself. Carpe diem, and all that.
* * *
Chemotherapy information card:
“If you feel unwell or your temperature is more that 38 degrees celcius, or you have loose bowels or diarrhoea, you must contact the Oncology Department, day or night.”
Yeah, right! For a start, show me anyone on chemotherapy who doesn’t feel unwell. It tends to happen when your veins are slammed with poison. I can imagine the conversation with the hospital:
“Hi, I’ve been told to ring this number because I’m feeling unwell.”
“Is there some specific reason why you’re feeling unwell?”
“I might be wrong, but I suspect it’s because I just received a big bag of toxic chemicals delivered intravenously.”
“Perhaps you should ring the Police instead of the Hospital?”
And as for toilet habits, don’t ask. My post-chemo instructions included the advice to close the lid of the toilet after using, and to double flush. Why, you might ask? Because the poison they put in you has to come out, and it tends to do so by being excreted. While it’s okay for the patient who is being made sick intentionally, it could cause serious health issues for members of the family.
I alternate between constipation and diarrhoea, depending on what day of the week it is. The latter is explosive, highly flammable, and leaves me feeling that the world has just dropped out of my bottom. When I report this to my oncologist at our next meeting, he chides me for not having rung the designated phone number. Did I not realise this could be life-threatening?
Well excuse me for being so recalcitrant. I had thought it was a combination of cancer cells, serious surgery, chemical castration, radiation being beamed into my body, and ingestion of a chemical concoction designed to exterminate every growing cell, that was life-threatening. The combined side-effects of my various forms of treatment would be enough to drop a bull elephant in its tracks. Diarrhoea is just a reminder that shit happens.
* * *
Health is a strange beast. It’s about being whole. All the physicians in the world can’t fix a person who doesn’t want to be healed. From early on in this journey I determined to take responsibility whenever it was available to me. I work with the medical professionals who do what they can for this much-abused envelope of flesh and bone, but I don’t regard them as magicians. An illusionist would at least get your name right now and again.
My own non-patented medications consist of hope, love, humour, community, endurance, forgiveness, acceptance, and stubborness. Especially the last one. I plan for the future even when it’s in doubt. I live in a landscape where the hills and the sky by and large ignore my struggles, and chant their own mantra of tenacity. The people around me laugh with me and at me, and I soak up their love like a withered twig.
I imagine that to seek life you have to enjoy it, and I do. A day is as long or as short as you make it. Each moment of awareness lasts a thousand years. Or no time at all. I carry within me the seeds of my own destruction, as we all do. Dying is not the worst thing that can happen. Failing to live fully is. Cancer can only take that which is offered to it.
* * *
Sometimes when you look up into an azure sky, you see a vapour trail that leaves a white streak across the heavens, made by a passing plane. I stare and wonder who are the people being whisked magically through the firmament. Adherents of conspiracy theories call them chemtrails, and suspect they are evidence of poison being distributed across the earth.
Now when I see them I think (equally stupidly) that maybe they mark the passage of souls into the afterlife. I realise this is what’s called ‘magical thinking’. Occasionally we all need a little magic in our lives. Some of them might be chemo trails – arcs left behind by those who have found their escape and are now moving on to who knows what.
As Van Morrison once said, ‘Let go into the mystery...’
Mike Riddell is a Kiwi writer. Find him at www.holybucket.com